Category Archives: Trends

White House Champions and the Dream of Personalized, Precision Medicine (#WHChamps)

White House Champions of Change - Precision Medicine #WHChamps

A couple weeks ago, I had just started a blogpost on the White House Precision Medicine Initiative, when I heard that within the HOUR there would be an update from the White House on this very topic, livestreamed! I scrambled, livetweeted, and this is no longer the post I had planned to write, but a rather different one, that has taken a good bit more time than what I had planned. The ‘update’ on the Precision Medicine Initiative turned out to be a White House Champions event. I had not previously heard of the White House Champions, but it turns out this is a wonderful series of events that have been going on through Obama’s Presidency honoring community innovators in a wide range of topics & issues where America has needed innovation:
AIDS/HIV,
campuses,
citizen science,
crowdfunding,
disaster preparedness,
domestic violence,
education (several of these events for different challenges),
food security,
LGBT,
libraries and museums,
NASA,
open government,
open science,
Parkinson’s disease,
public health and prevention,
science equality for women and persons with disabilities,
suicide prevention,
tech innovation and inclusion,
veterans (several of these events for different challenges),
youth homelessness,
youth violence,
and much, much, MUCH more! My mind is just ringing with all that I’ve missed, and all the wonderful creative innovators I don’t yet know about. How did I miss all of this?

At least I didn’t miss the Precision Medicine event! Here are the honorees, and the treasures they have shared with us, in a very small terse form.

Marcia Boyle (MB’s blogpost about the Immune Deficiency Foundation (IDF). Find them on Twitter at @MarciaIDF and @IDFCommunity)

Hugh Campos (HC’s blogpost about data liberation. Find him on Twitter @HugoOC)

Elizabeth Gross Cohn (EGC’s blogpost on the Adelphi University Center for Health Innovation, their Communities of Harlem Health Revival, and their interactive graphic novel. Find her on Twitter at @Chi_Cohn)

Amy Gleason (AG’s blogpost about CareSync. Find her on Twitter at @ThePatientsSide)

Amanda Haddock (AH’s blogpost about Dragon Master Foundation. Find them on Twitter at @AmandaHaddock and @DragonMasterFdn)

Emily Kramer-Golinkoff (EKG’s blogpost about Emily’s Entourage. Find them on Twitter at @emilykg1 and @EmsEntourage4CF)

Howard Look (HL’s blogpost about Tidepool. Find them on Twitter at @HowardLook and @Tidepool_org)

Dorothy Reed (DR’s blogpost about Sisters Network of Central New Jersey (SNCNJ). Find SNCNJ on Twitter at @sistercentral)

Anish Sebastian (AS’s blogpost about Babyscripts. Find him on Twitter at @ASebastian87 and @Babyscripts)

Here is the best Storify I’ve found of the #WHChamps event, by E. Keeley Moore.

It’s amazing that there were over 1000 tweets per minute at the peaK. Here is the Symplur archive of all the event’s tweets:

Symplur: Healthcare Hashtag Project: #WHChamps http://embed.symplur.com/twitter/transcript?hashtag=WHChamps&fdate=07%2F08%2F2015&shour=05&smin=25&tdate=07%2F09%2F2015&thour=00&tmin=00

Did you miss it and want to see it? The entire hour-long event was recorded and is available in the White House Youtube channel.

White House Champions of Change – Precision Medicine https://www.youtube.com/watch?v=yi1Tw1narVo

DARPA: Biology IS Technology, Biology is INFORMATION Technology #DARPAbit

150225-N-CJ559-024

This is possibly the coolest (or scariest) thing I’ve seen since I become an Emerging Technologies Librarian. I wanted to blog about it a WEEK ago (which is when I made the Storify, over the weekend because I was so geeked I couldn’t wait). The reason I didn’t blog it then was because our library is moving into our renovated digs TODAY and packing took precedence. Somehow that delay just makes this even more delicious. You MUST see this!

DARPA (Defense Advanced Research Projects Agency) is the branch of the United States government most directly and publicly associated with emerging technologies. You better bet that I pay attention to what they’re doing. I try to peek at the DARPA budget, go every so often and poke around on their site, and keep my antennae tuned for mentions of DARPA in the news. They are in the news basically all the time, so I can’t pay TOO much attention, and since in recent years they have been largely focused on robotics (a.k.a. the famous DARPA Robotics Challenge) and engineering, and I am focused on healthcare emerging tech, maybe I haven’t visited as often as I might if it was just for fun. That has changed, because DARPA is now officially into the idea of biology as technology. Check out their recent conferences on this topic: Biology is Technology!

“DARPA’s Biological Technologies Office (BTO) is bringing together leading-edge technologists, start-ups, industry, and academic researchers to look at how advances in engineering and information sciences can be used to drive biology for technological advantage.”

Oh, my, yes. Now, THIS is right on target for what I want to know about in my job. And I bet there are all kinds of grants coming around and possible partnerships that our faculty will want to explore. Here are just a few of the bits the news media picked up from these conferences: targeted antibody development and THoR (Technologies for Host Resilience); brain-computer interfaces; cortical modems & optogenetics; engineered biology and GMOs more broadly; exoskeletons; memory technologies; open data and open source; prosthetics; terraforming Mars with GMOs (and there was a LOT on this!).

Craig Venter on headless humans and predicting your exact face from your DNA

There are some topics that interested me that the news hasn’t seemed to talk about yet, at least not prominently. Aging and immortality. Biocomplexity and Crohn’s disease. Cancer. Innovative research methodologies. Microbiomics. Transplantation and organ farming. Future of scholarship. Oh, and there is SO much more. It was livestreamed, but I couldn’t free up the time to watch it, so I am trying to work through the videos now. Here, join me.

DARPAtv: Biology Is Technology (San Francisco, February 2015) https://www.youtube.com/playlist?list=PL6wMum5UsYvZnisi5VjUUjhpXoIMTSCwx

Arati Prabhakar – Director, DARPA
Fireside Chat: Sue Siegel CEO GE Ventures
Geoff Ling – Director, BTO: Fomenting Technological Revolution
Phillip Alvelda – Program Manager: Beyond Prosthetics
Dan Wattendorf – Program Manager: Outpacing Infectious Disease
Jack Newman, Amyris
Alicia Jackson – Deputy Director, BTO: Programming the Living World
Fireside Chat: George Church interviewed by George Dyson
Justin Sanchez – Program Manager: Brain-Machine Symbiosis
Matt Hepburn – Program Manager: It’s the Host not the Pathogen
Stephen Friend – Sage Bionetworks
Barry Pallotta- Program Manager: A Wild Ride
Doug Weber – Program Manager: Enabling the Body to Heal Itself
Justin Gallivan – Program Manager: Embracing Biological Complexity
Keynote Craig Venter – Founder and CEO, HLI, JCVI and SGI
Keynote Saul Griffith – Otherlab
Karl Deisseroth, Stanford University
Will Old, University of Colorado at Boulder
Michel Maharbiz, University of California, Berkeley
Eddie Chang, University of California, San Francisco
Adam Abate, University of California, Berkeley
Scott Ulrey: Doing Business With DARPA

DARPAtv: Biology is Technology (New York City) https://www.youtube.com/playlist?list=PL6wMum5UsYva5aoxvLejhB9eirt0TVD-K

Alicia Jackson – Deputy Director, BTO: Programming the Living World
Welcome to DARPA BiT from Dr. Steve Walker, Deputy Director of DARPA
Dr. Geoff Ling: Fomenting Technological Revolution, DARPA BiT
Martine Rothblatt: Keynote at DARPA BiT
Dr. Phillip Alvelda: The Future of Neural Interface, DARPA BiT
Dr. Alicia Jackson: Programming the Living World, DARPA BiT
Jack Newman: Keynote at DARPA BiT
Zach Serber: Keynote at DARPA BiT
Dr. Elizabeth Strychalski: Biocomplexity, DARPA BiT
COL Matt Hepburn: It’s the Host Not the Pathogen, DARPA BiT
Dr. Doug Weber: Neurobiology as Technology, DARPA BiT
Kevin Tracey: Keynote at DARPA BiT
Dr. Justin Sanchez: Brain-Machine Symbiosis, DARPA BiT
MAJ Chris Orlowski: Optimizing Human Performance, DARPA BiT
COL Dan Wattendorf: Rapid Health Protection for the Population, DARPA BiT
Dr. Harvey Lodish: Keynote at DARPA BiT
Dr. Justin Gallivan: Building with Biology, DARPA BiT
Dr. Barry Pallotta: A Wild Ride, DARPA BiT
Dr. Geoff Ling: Day 1 Closing Remarks, DARPA BiT
Dr. Geoff Ling: DARPA BiT Day Two Introduction
Dr. Stephen Friend: Sage Bionetworks – DARPA BiT Keynote Speaker
Dr. Paul Cohen: DARPA Program Manager, DARPA BiT Keynote Speaker
Dr. Joel Dudley: Mount Sinai School of Medicine – DARPA BiT Keynote Speaker
Dr. Peter Sorger: Harvard Medical School – DARPA BiT Keynote Speaker
John Sculley: Former CEO of Apple and Pepsi-Cola – DARPA BiT Keynote Speaker
Scott Ulrey: DARPA Contract Management Office – DARPA BiT
Dr. Geoff Ling: Day 2 Conclusion – DARPA BiT

So much good stuff! I just had to make a Storify to integrate the videos with the pics and tweets.

And I made a big playlist with all of the videos so far, from all the sessions (partly because I started making this playlist before I found theirs, and because I want all of it in one place, easy for me to find).

Patricia Anderson: Playlist: DARPAbit: https://www.youtube.com/playlist?list=PLEEZFNZ4nUEDTdj_dxxYLz9z7kSZH-oP1


REFERENCES (Chronological order)

2015/02

Robbin A. Miranda, William D. Casebeer, Amy M. Hein, Jack W. Judy, Eric P. Krotkov, Tracy L. Laabs, Justin E. Manzo, Kent G. Pankratz, Gill A. Pratt, Justin C. Sanchez, Douglas J. Weber, Tracey L. Wheeler, Geoffrey S.F. Lin. DARPA-funded Efforts in the Development of Novel Brain–Computer Interface Technologies. H+ Magazine February 9, 2015. http://hplusmagazine.com/2015/02/09/darpa-funded-efforts-development-novel-brain-computer-interface-technologies/

Peter Rothman. Video Friday: DARPA Prosthetics Research. H+ Magazine February 13, 2015. http://hplusmagazine.com/2015/02/13/video-friday-darpa-prosthetics-research/

Peter Rothman. Biology is Technology — DARPA is Back in the Game With A Big Vision and It Is H+. H+ Magazine February 15, 2015. http://hplusmagazine.com/2015/02/15/biology-technology-darpa-back-game-big-vision-h/

Max Plenke. These Are the 7 Ways the Government Wants to Change the Human Body for the Future. Tech.Mic June 26, 2015. http://mic.com/articles/121341/darpa-biotech-7-ways-the-government-wants-to-change-the-human-body-for-the-future

2015/04

Peter Rothman. Restoring Active Memory Replay — DARPA Seeks Super Learning and Enhanced Memory Technologies. H+ Magazine April 28, 2015. http://hplusmagazine.com/2015/04/28/restoring-active-memory-replay-darpa-seeks-super-learning-and-enhanced-memory-technologies/

Maxx Chatsko. Can DARPA Change Your Mind on Engineered Biology? The Motley Fool interviews DARPA’s Dr. Alicia Jackson from the Biological Technologies Office. The Motley Fool April 30, 2015. http://www.fool.com/investing/general/2015/04/30/can-darpa-change-your-mind-on-engineered-biology.aspx

2015/06

Sara Reardon. The Pentagon’s gamble on brain implants, bionic limbs and combat exoskeletons. Nature News June 10, 2015. http://www.nature.com/news/the-pentagon-s-gamble-on-brain-implants-bionic-limbs-and-combat-exoskeletons-1.17726

Lily Hay Newman. Researchers Sharing Data Was Supposed to Change Science Forever. Did It? Slate: Future Tense June 24, 2015. http://www.slate.com/blogs/future_tense/2015/06/24/darpa_s_biology_is_technology_conference_discusses_problems_with_open_source.html

Brian Wang. DARPA wants to engineer from millions of organisms and not just yeast and ecoli. Next Big Future June 25, 2015. http://nextbigfuture.com/2015/06/darpa-wants-to-engineer-from-millions.html

Carl Engelking. DARPA Is Supposedly Engineering Organisms to Make Mars Livable. Discover Magazine June 26, 2015. http://blogs.discovermagazine.com/d-brief/2015/06/26/darpa-is-engineering-organisms-to-make-mars-livable/

Carl Tanaka. DARPA Genetically Engineering Organisms for Terraforming Mars into Livable Planet. ReliaWire June 27, 2015. http://reliawire.com/2015/06/darpa-genetically-engineering-organisms-for-terraforming-mars-into-livable-planet/

DARPA to terraform Mars with human-engineered organisms. Business Standard June 28, 2015. http://www.business-standard.com/article/pti-stories/darpa-to-terraform-mars-with-human-engineered-organisms-115062800459_1.html

A Tack Board of Tags (HOTW July 19, 2015)

There have been some fantastic conversations on Twitter this week, on a huge diversity of topics and organized around some intriguing hashtags. I was personally involved with the Summit for the Mayo Clinic Center for Social Media (#MCCSM) and the local systematic review training course (UMTHLSysRev). It was a series of happy coincidences that led me to the events Astrobiology Science Conference 2015 (#AbSciCon); Inspirefest 2015, the future of science, technology, engineering, and mathematics with new perspectives on innovation, leadership and success (#inspirefest2015); and International Association for Suicide Prevention (#IASP2015). I was surprised to find two very relevant Twitter chats that were new to me: hereditary cancer chat (#hcchat) and the Internet of Things chat (#IoTchat). Last but far from least, the nursing-inspired #WhyWeDoResearch tag is a very motiving and inspiring meme to explore. I’ll put just a few examples of each below, hoping to intrigue you enough to go look at these yourself.



Mayo Clinic Center for Social Media | #MCCSM (#mccsm archive)



Systematic Reviews Workshop: Opportunities for Librarians |
#umthlsysrev (#umthlsysrev archive)



Astrobiology Science Conference 2015 | #AbSciCon



Inspirefest | #inspirefest2015



28th World Congress of the International Association for Suicide Prevention, Montreal, 2015 | #IASP2015 (#IASP2015 archive)



Hereditary Cancer Chat #HCchat
(#HCchat archive)



#IoTChat: Internet of Things Twittersphere Chats Evolve | #IoTchat



Why We Do Research Campaign (Weebly sites blocked in UM hospitals) [Campaign video 1; campaign video 2] | #WhyWeDoResearch (#WhyWeDoResearch archive)

What’s New, What’s Hot: My Favorite Posters from #MLAnet15

Part 3 of a series of blogposts I wrote for the recent Annual Meeting of the Medical Library Association.


I had a particular slant, where I was looking for new technology posters, emerging and emergent innovations, but then I was so delighted with the richness of systematic review research being presented, that there is a lot of that, too. The chosen few ran from A to Z, with apps, bioinformatics, data visualization, games, Google Glass in surgery, new tech to save money with ILL operations, social media, Youtube, zombies, and even PEOPLE. What is it with medical librarians and zombies? Hunh. Surely there are other gory engaging popular medical monsters? Anyway, here are some of my favorite posters from MLA’s Annual Meeting. There were so many more which I loved and tweeted, but I just can’t share them all here today. I’ll try to put them in a Storify when I get back home. Meanwhile, look these up online or in the app for more details. By the way, they started to get the audio up, so you can use the app to listen to many of the presenters talk about their poster.

Poster 14:

Poster 28:

Poster 30:

Poster 38:

Poster 40 (and that should read “Twitter”, not “Titter”):

Poster 43:

Poster 54:

Poster 65:

Poster 83:

Poster 100:

Poster 121:

Poster 125:

Poster 130:

Poster 157:

Poster 202:

Poster 224:

Poster 225:

Poster 228:

Poster 238:

Poster 243:

Tech Trends VIII (#mlanet15)

Part 2 of a series of blogposts I wrote for the recent Annual Meeting of the Medical Library Association.


#MLATTT #MLANET15

The event so fondly known as MLATTT is a gathering of a panel of medical librarians who describe new and emerging technologies in what has become, by a kind of traditional, highly entertaining and engaging ways. For many, it is a not-to-be-missed highlight of the annual Medical Library Association meeting. This year was no different, and if anything topped previous years for sheer blistering hilarity. When the video becomes available, this is a must watch. I plan to watch it again, and I was there!

#MLATTT #MLANET15

Eric Schnell gave a talk that had the older members of the audience guffawing with laughter as he extolled the pleasures of emerging technologies from the perspective of the 1980s and 1990s. There were some younger folk asking, “Mosiac? Atari?” It was extremely well scripted and supported with links and images, and delivered completely deadpan.

#MLATTT #MLANET15

The quantified self section presented by Jon Goodall was great fun for me, and I particularly enjoyed how he engaged the audience in reviews of some of the highlighted technologies. It was interesting to see who had used various tools, and whether they worked for them or not.

#MLATTT #MLANET15

Kimberley Barker was incredibly dynamic, personable, and knowledgeable, as she sprinted through a rapidfire, high energy delivery of examples of tools, technologies, and trends relative to what’s happening with the Internet of Things.

#MLATTT #MLANET15

Jason Bengtson gave a candid, rollicking walk-through of some of his thoughts and experiences while creating the engaging information skills tutorial, Zombie Emergency. I was really impressed with how clearly he described the challenges of integrating education goals and content with gaming. Rachel Walden expressed well what I was thinking, when she commented on how impressive it was that Jason coded this, and is giving away the code for free in Github, as CC-licensed. You can find the actual quotes in the Storify, listed at the end of this post.

#MLATTT #MLANET15

J. Dale Prince might have been last, but far from least, as he wittily recounted his tales of being a new Apple Watch owner, pros, cons, and maybes. By the way, if you decide to buy a gold Apple Watch, Dale is willing to trade. ;)

Here’s the Storify, with much much more detail.

An archive of the tweets is available here, through Symplur. Almost 400 tweets in one hour?! That should tell you how much fun folk were having!

http://www.symplur.com/healthcare-hashtags/mlattt/

Molecular Biology & Genomics SIG Meeting #mlanet15

Part 1 of a series of blogposts I wrote for the recent Annual Meeting of the Medical Library Association.


MolBio & Genomics SIG #mlanet15

I’m trying to track what’s going on with emerging technologies, new tools, new-to-me tools, and so forth. I’m not an official member of the MolBioGen SIG, but I wish I was (especially since personal genomics is one of my hobbies). I learned so much at their meeting Monday morning. The best part was the Round Table, where they each talked about who they are, what they do, what’s new at their place. Now, this was exciting! They talked about many tools they seemed to all know and take for granted, and I’ll share some of those later. They also had so many exciting and creative ideas for how to engage their target audiences, types of classes that are most effective, crowdsourcing instruction from within the audience, strategic partnerships that make a difference, strategies for point-of-care genomics, and so much more.

Here are the tools that I found most interesting.

PhenoTips
PhenoTips

Reactome
Reactome

Online Bioinformatics Resource Collection
Bioinformatics MOOCs Example

Galaxy Project
Galaxy

Open Helix
OpenHelix
(Note: These folk are in the Exhibit Hall, if you haven’t seen them yet.)

BioStars
BioStars

GenePool
GenePool

Data Carpentry
Data Carpentry

Project Hydra
Hydra

Fedora
Fedora

NCBI: Gene Expression Omnibus (GEO)
GEO (Gene Expression Omnibus)

Complete Genome: Public Genome Data
Complete Genomics Public Data

NYU Data Catalog
NYU Data Catalog

Want more? Check out the Storify!

Informed Consent in a New Era

Informed Consent copy

I’m a big fan of John Wilbanks’ work in the area of open personal health data and informed consent, and have blogged about that here before. Briefly, my awareness of John’s work began with “We Consent” which has now transformed into Sage’s “Participant Centered Consent Toolkit.”

Cool Toys Pic of the day - We Consent
Sage: Participant-Centered Consent Toolkit (E-Consent)

Recently someone asked me a question about “online informed consent.” I think they were remembering my having mentioned John Wilkin’s stuff, a.k.a “portable legal consent” or “portable informed consent.” These and “online informed consent” are … related concepts, but perhaps not as closely related as some might think. Just to complicate matters, people are also using jargon like “dynamic consent” and “broad consent” to mean things related to both of these, but which are not quite the same. There are also people trying to get the phrase “informed consent” converted to “educated consent” as possibly being more meaningful. In this post, I will try to sort some of this out, but I’m no kind of expert in consent, and this is complicated, really REALLY complicated.

First, the short-short explanation. Portable informed consent (PIC) usually is part of online informed consent, but online informed consent (OIC) is rarely portable. Riiiight. OK, a step backwards.

PORTABLE CONSENT

The idea of portable informed consent is (in my mind, at least) analogous to Creative Commons licensing for your own creative works, except that it applies to your own health data. Actually, the idea of this really came from people wanting to share genomic data. You walk through an online informed consent process, agree to which version of a license you are comfortable with, and then when you share your data in a secure repository, that license or consent agreement is attached. People who want to use your data, must agree to follow those predetermined restrictions. Researchers who don’t agree, aren’t allowed to see your data, only data from other folk who agree to whatever guidelines they need for their project. Researchers who don’t follow the rules will be denied access to all of the data.

Personal Genomics

Genomics is basically mapping the genome. Personal genomics is doing this for a person in particular, rather than a species or condition or other collective group. Some people get involved in exploring personal genomics because of simple curiosity, but many are driven by long standing medical challenges without any easily identifiable solution. Some people are terrified at the idea of what they might find out. Others are concerned that the data will result in problems with jobs or insurance. Those urgently seeking help for health problems often want to share and find others who might have insights into their problem. OpenSNP and the Personal Genome Project are two examples of places where people share their genomic data. By making their data public and consenting to its use by researchers, they are hoping to support solutions not only for themselves but for others like them. Making sure that consent is LEGAL is essential for supporting future research. One great example of this is Jay Lake, who contributed his whole DNA sequencing data and that of his tumor, making possible research on new treatments that came too late for him. It’s a powerful story.

ONLINE INFORMED CONSENT

Online informed consent is a great deal simpler, in that it mostly takes the usual informed consent process (reading forms, signing forms, filing forms) and puts it all into an online web-based interface in a secure system. But, PIC gets more buzz in the popular press and media, while OIC gets more attention from within the hallways of day-to-day research communities. PIC grew out of work with personal genomics and is designed to make data sharing simpler, research more open, and problem solving more dynamic, all while still being responsive to issues of privacy and ethics. OIC is a tool designed to make the IRB management simpler for researchers.

DYNAMIC CONSENT

Dynamic consent is closer to portable consent, but grew more out of tissue and biobanking contexts, rather than data or genomics. Dynamic consent has a lot of nitpicky little options, and allows you to change your mind over time. That’s why it’s dynamic — things keep changing. Right now, dynamic consent is used primarily for what happens to parts of your body that are removed from your body while you are alive, and used for various medical purposes. Sometimes those purposes involved throwing what wasn’t used in the nearest incinerator, but sometimes there is something interesting and the doctors or researchers want to keep a sample for future use.

Biobanking

Now, remember, I’m drastically oversimplifying here. There are many more situations and options that come into play. Healthcare researchers have come to realize that we often don’t know where the next interesting possibility will come from, which is part of why biobanking is becoming more important. A biobank is sort of a library of tissues (meaning parts of human or animals or plants). Biobanks are often focused on a certain type of tissue or condition. Many biobanks collect tissues for a particular kind of cancer, or conditions like Parkinson’s, Alzheimer, autism, etc. Others may focus on a particular organ, like brains, breast tissue, lungs, or genome. In book and journal libraries, the librarians have traditionally spent a lot of time trying to select just the most important material on their special topics, but over generations, we’ve found the most desired content is as often as not the parts that were considered cheap and unimportant at the time, which are now expensive and hard to find, because no one kept them. Some of the same issues are coming up with biobanking, but complicated by the challenge of each and every sample being unique (although there might be copies of cell lines). At least with books, if one library lost theirs, another library might have a copy. Part of the idea of all these different kinds of consent is to try to maximise the number and diversity of samples that can be preserved and made accessible to future researchers.

PRESUMED CONSENT

Presumed consent also related to tissues, actually organ donation, but after you are no longer alive or aware enough to give or change your consent. Where I live, you have to register as an organ donor. If you don’t, and are in a fatal accident, no one is allowed to use your organs as transplants to save the lives of other folk who need new organs to survive. That isn’t how it works in all countries, though. In some countries they have “presumed consent,” where the assumption is that organ donation is fine with you as long as you don’t say NO beforehand. So, opt-in vs. opt-out. That’s the main difference. Sounds simple, doesn’t it? But people have incredibly strong feelings about both of these options.

BROAD CONSENT

Broad consent is probably the messiest of all of these. Just look at these article titles!

Can Broad Consent be Informed Consent?

Broad consent is informed consent

Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem?

Broad Consent Versus Dynamic Consent: Pros And Cons For Biobankers To Consider

Broad Consent in Biobanking: Reflections on Seemingly Insurmountable Dilemmas

Should donors be allowed to give broad consent to future biobank research?

You can just feel the tensions rising as you read through the list. It is obvious that this is not an area of consensus. And what can it possibly mean to consent mean when there isn’t an agreement about what consent is?

“Broad consents are not open nor are blanket consents. To give a broad consent means consenting to a framework for future research of certain types.” Steinsbekk KS, Myskja BK, Solberg B. Broad consent versus dynamic consent in biobank research: Is passive participation an ethical problem? European Journal of Human Genetics (2013) 21:897–902.

Broad consent attempts to make a best guess of what might be needed by the researcher of the future, and to try to get the individual to agree to a flexible use and reuse of tissues, samples, or data. As you can tell from the titles above, “broad consent” tends to refer to tissues rather than data, but when you get down to brass tacks, all of these could theoretically apply to a wide variety of donated content.

CLOSING THOUGHTS

The idea behind all of these myriad forms of consent is knotted into the dynamic between the rights of the individual and the needs of the community. Without research, we stagnate and die, literally, since solutions cannot be discovered for the aches and pains and problems that lead to increased mortality and reduced longevity. As a community, as a species, we don’t make progress without sharing. At the same time, the goal is to reduce harm to individuals, and forcing people to ‘consent’ against their will causes harm. I’ve known people who practically had a nervous breakdown at the idea of becoming an organ donor, the idea of part of them living on in someone else distressed them that deeply. I know others who fear what could happen to them if their genetic data fell into the “wrong hands.” I’m not one of them. I’m a registered organ donor, and I donated my genomic data to OpenSNP. But I still respect the emotional pain that would be caused by forcing consent. It’s an ethical dilemma which our society is obviously still working to solve. While looking at background material for this post I stumbled across two phrases that seemed to express some of the challenges well: “From Informed Consent to No Consent?” “Open Consent for Closed Minds.”

“I’m proposing … that we reach into our bodies and we grab the genotype, and we reach into the medical system and we grab our records, and we use it to build something together.” “I hate [the] word ‘patient.’ I don’t like being patient when … health care is broken.” John Wilbanks